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Dylan’s story: Priceless

Dylan was born with Scimitar Syndrome. His mum Helene discusses life with her special boy and how Together for Short Lives helped with the cost of living.

The Diagnosis

At the 20-week scan, it was suspected, and then confirmed, that Dylan had Scimitar Syndrome, a rare heart and lung condition. “We were told there was a risk that Dylan’s lungs wouldn’t cope and he might not survive. But we wouldn’t know until he was born. Nobody knew what the outcome would be. It was a very uncertain time.”

To mum Helene’s relief, baby Dylan was born a few weeks later. “Dylan was born with two black eyes and his fists up and he hasn’t stopped fighting since!”

Dylan was born with only one functioning lung, but he hasn’t let that stop him living a full life. “From day one, he has been the most loving, funny and intelligent little boy. And he’s incredibly sassy! Every second spent with him has been a joy.”

Hours, then days, passed and Dylan grew from strength to strength. Helene was reassured by the nursing team that Dylan would be able to live a normal life. Things were looking positive for the family.

But as Dylan grew, he took a turn for the worse. “It soon became clear that his better lung wasn’t great either. Dylan was admitted back into hospital where he spent almost a whole year without leaving. He had open heart surgery and a tracheostomy fitted, and countless other interventions. We’ve been in and out ever since.”

Dylan's story from impact report

What the cost of living has meant for Dylan and Mum Helene…

Dylan relies on 24/7 care to survive, much of which uses electricity to run. “We have so many pieces of medical equipment in our home just to keep him alive. We have ventilators, oxygen, suction machines, SATS monitors and a power assisted bed, all of which Dylan relies on.”

As a single mother, Helene faces additional pressure caring for Dylan. “Being on my own, I have had to make many sacrifices for Dylan’s care. I don’t have anyone to share the struggles with. But I would do absolutely anything for my boy. It’s me and Dylan against the world.”

On top of this, Helene was also facing spiralling energy costs, which made running Dylan’s essential medical equipment even more challenging. Reducing their energy usage wasn’t an option.

Helene was struggling to afford the essential electricity needed for Dylan’s care. The family were desperate for help.

Dylan and Mum

How Our Grant supports families like Dylan’s

Through Dylan’s nursing team at the local hospital, Helene was referred to receive the £250 Cost of Living Grant from Together for Short Lives – a financial gift to help families pay the running costs of essential medical equipment.

“The grant has helped us massively. As a single parent, I’m the only one bringing in income to support our little family. The grant made a huge difference in not having to worry where the money was going to come from for our energy bills. I am forever grateful.”

Dylan’s family is one of the 674 families we have paid £250 and supported with the cost of living grant, you can read more about our cost of living grant in our 2022 – 2023 impact report here.

Family stories